Incurable Cancer Retreat – Written for Cancer Fight Club’s Blog

The following is a blog I wrote a couple weeks ago for Cancer Fight Club. It is about a Metastatic and Advanced Young Adult Cancer Retreat I went to last year. I have for a while, been trying to get my head around what that few days have meant to me. How important it is to make connections. How that foundation and being part of that community has allowed me to feel confident in who I now am. It has taken me a year to start to process what was a very unexpected and profound experience. This retreat came about because a dear friend of mine Alicia Murchant spoke out about how the cancer experience is different for those of us with advanced and metastatic disease and we need programming and support that reflects those differences.

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It was there that I first felt it. Sitting in an intimate and understated room in the middle of a forest surrounded by unfamiliar faces. Gentle teasing, warm smiles and laughter filled the room and seemed to bounce off the walls. I was part of a community. I had a place to belong. That feeling of belonging was reflected in the faces of my peers. In their affection and warmth towards me – a stranger – and towards each other.

A hearty laugh erupted from a young woman with sparkling eyes as she got up from her seat and playfully teased one of the facilitators about a new tattoo. The facilitator laughed. The room laughed. There was empowerment and community in that laughter. There was strength in the playfulness. Intuitively I felt accepted and embraced and part of a whole. Finally I could release my filters. I could drop the barriers that I had built to protect myself. In that moment I was free from the self imposed guilt I felt when I told my story exposing cancer’s underbelly. The dark side of cancer. The cancer that no one likes to talk about. Cancer that is incurable and eventually terminal. In that moment, I became a member of a community. A group of people connected by something that we cannot change or control.

There is something about social gatherings that always scares the crap out of me. I usually arrive filled with nervous anticipation. Afraid of the unknown. Afraid of feeling like an outsider even when I’m facing a gathering of like-minded people. This may stem from the fact that I am often unsure of my ability to make connections. Afraid of not being vulnerable enough and being too detached. That I won’t be able to let people in. My husband is my character foil. He flourishes in groups both big and small. He anticipates social gatherings with a sense of ease, excitement and confidence. I will often find myself blurting out to someone in forced casual awkwardness “So this weather…” This is usually followed by the sound of my feet shuffling as I try to force a smile.

It was with this nervous anticipation that I, accompanied by my husband and a close friend with advanced ovarian cancer entered La Petite Auberge de Jouvence in the Eastern Townships. We were early, which is usual when travelling with my husband. The building felt warm, intimate and inviting. A wood fire crackled and reflected off the comfortable seating. A wide panorama of windows revealed that we were situated deep in a forest and overlooking a creek. I settled down by the fireplace and awaited the group’s arrival. Unlike the majority of participants we had driven from Toronto. We had found childcare, my husband had taken time off work, and we had driven 7 hours because this weekend was important. This weekend I hoped to create connections and be part of a community.

I am 37 years old and I have stage four, metastatic breast cancer. This is the bad kind of breast cancer that no one really talks about. It is incurable and will ultimately take my life. As with most young people my age I am in the thick of my life. I have two small children and a budding career as an architect. Until cancer I was healthy, active and ambitious. I had patiently begun to build my life. I had even started to discover the things that drive me and that make me dream without limits. My life was just starting to take flight when in an instant the world crashed at my feet. The diagnosis of metastatic breast cancer pilfered my drive, my dreams, my future, my identity and my ability to make connections. From the very moment the words “incurable” and “you will eventually die” crept from the strained lips of my oncologist, I felt alone. Alone in a community who loved me. Alone with my grieving husband. Alone with my grieving friends and family. Alone in my own grief.

It was my husband who initiated outside support for me. I was too enveloped by grief and anxiety to reach out. He contacted friends, family and established connections with various cancer organizations. I went to local events, young adult networking groups, conferences, lunches, art classes, meditation courses and film festivals and found each time I would leave feeling more isolated and in tears. Maybe it was the awkward silence when I disclosed my diagnosis. Maybe it was when someone would change the subject when I tried to talk about my anger, my fears, my sadness. Maybe it was when I was directed to be more positive when I tried to face my mortality. Maybe it was when speaker after speaker told only stories that reinforced cancer as something to move on from. Somewhere within those moments I started to build walls and barriers to protect how vulnerable and alone I felt.

It was there, in the Eastern Townships, sitting safely in that room, in a group of my peers that I finally felt free to grieve, to laugh, to put words to my inner demons. I began to allow myself to address my pain and my guilt. It was in this community that I finally began to break down my barriers and focus on living. There were late nights filled with laughter, long walks that fostered connections. We talked and listened. We found the freedom to discuss our dreams, our ambitions, our darkness, our families, our struggles and our accomplishments. We gave space for individual grief and for group grief. We laughed till we cried and cried till we laughed. We felt empowered in silences. Empowerment in our acceptance. Empowerment in our voices. Empowerment in our vulnerability. Somewhere between the structured and unstructured. Somewhere between the laughter and the tears we found community. I found community and most importantly I found myself.

In that moment, in that room, I found my strength. I found my voice.

#MAYACC Building a Twitter Community

Adolescent and Young Adult Cancer, Advanced cancer, Cancer, Metastatic cancer
The Metastatic and Advanced Young Adult Cancer Community is a live Twitter and community-driven event which takes place on the second Tuesday of every month at 9pm ET. The chat and hashtag were developed to connect and build community for young adults living with advanced and metastatic cancer. It was founded by Emily Drake, @ek_drake, the Director of @cancerfightclub in November of 2014

http://www.symplur.com/search/%23mayacc

Looking for Light in a Dark Room

Over the past decade, the young adult cancer movement has been breaking ground in providing support and services for individuals under forty with a cancer diagnosis. The Young Adult Cancer movement is important and invaluable. Although many organizations provide excellent, innovative programming there is a big hole in services for metastatic and advanced young adult cancer patients.

Over the past two years, since my diagnosis of metastatic breast cancer, I have attended many YA cancer events, programming and conferences. I was lucky enough to meet Alicia Murchant at one of these conferences. Alicia has advanced ovarian cancer and like me has found that there is a substantial hole in young adult cancer services. I cannot describe in words how meaningful connecting with her has been for me.  Until our meeting, I felt like I was in a deep dark hole alone.  I would go to YA cancer events and feel isolated and alone.  Like the skeleton in the closet that no one wants to address. Meeting Alicia has made a huge impact in my life. No longer am I alone. Alicia just gets it. She understands the nuances in my darkest thoughts and my struggles with trying to come to terms with a stage four diagnosis. Without explanation she understands how loaded accomplishments are and the importance of a creating a legacy. Alicia has been a long time advocate for young adults with metastatic and advanced cancer and meeting her has ignited my voice and empowered me to become one to. Most importantly my relationship with Alicia has taught me how important community and networks are. A community of people who are going through the same journey. Dealing with similar things and just get it.

The problems that exist in Young Adult programming are not owned by one organization alone.  For the majority, cancer is a hard bump in the road.  One of the significant questions for the young adult population is how to get your feet back on the ground after your life has been turned upside down by a cancer diagnosis.  This, for the most part, is a strength and the focus of existing YA organizations.  As such, they are very good at supporting and inspiring the majority.

Saying that, there is still an immense gap in support for those of us who are living with chronic and will one day be terminal cancer.  This gap reinforces and leads to feelings of isolation. The voice of the majority tends to conceal the voice of the minority. More than once I have met men and women, years into their journey that have never met another young adult with advanced/metastatic cancer. I don’t believe that existing cancer organizations purposely intend to contribute to this, but the lack of inclusivity and space for those of us living with incurable cancer contributes greatly to the problem.

Feelings of isolated can lead to individuals opting out. Its not necessarily because of the of the differences between the two YA populations. Although I wish my cancer was just a bump in the road it does not harm me to be around individuals dealing with that reality. There are commonalities between both populations. Our lives are interrupted. Our treatments although different in duration are similar in nature. Segregation is not the answer. Both communities have a lot to give each other. It is also important for the majority to know that you can live with advanced cancer. Metastatic/advanced cancer is not an automatic death sentence. As such, I believe the way forward is through collaboration and balancing integration with specialization.

Young adult cancer organizations need to make a conscious decision in regards to their mandate. To choose to provide inclusive programming and support for the YA cancer community as a whole or to focus on providing support for YA’s who are getting through and beyond cancer.  To provide inclusive support, there needs to be careful and detailed examination of what is being promoted, written, developed, acted upon and said.  Words have power and meaning and can set the groundwork for change.

First off, the term Survivor needs to be explored.  No matter how you choose to define it, it can be an isolating term.  The dictionary definition of survivor is as follows: “a person who survives, especially a person remaining alive after an event in which others have died”.  The cancer community as a whole loves to use this term.  It expresses clearly the cancer experience for the majority of people.  Cancer is something to get over, it can be an empowering experience, a catalyst for life change.  There is an impact from using that term for people like me, whose cancer experience will culminate with my death.  It plain and simple contributes to our perceived isolation.  It places us on the outside enviously looking in.  It reinforces our tragic circumstances and divides us from our young adult cancer peers.

Terms like ‘living with’ need to be added to mission statements that talk about empowering individuals to move through and beyond a cancer experience.  There needs to be space for the metastatic and advanced experience. Dealing with a terminal/chronic diagnosis, goals tend to become centered on acceptance. We strive to develop the skills and awareness to embrace the reality of our journeys. We look to find the best possible way to live full lives within our limitations. Finally we search to discover a way to face leaving this earth with the greatest amount of grace and dignity as possible.  This is hard work.  This is almost an impossible task.  How can you become comfortable with the fact that in the beginning of your life you are facing the end of your life?  This is the dark side of cancer.  This is the side of cancer that cannot be faced only through the power of inspiration and positive thinking.  Positive thinking is a loaded phrase.  It can lead people to believe that if you embrace and try to get comfortable about the dark side of cancer you are thinking negatively.

I believe that YA programming should not be focused on reinforcing the belief that positive thinking is the solution.  By focusing on that mantra organizations do a disservice to those of us who are dying.  There needs to be space for the fact that positive thinking is not the only solution.  The AIDS movement, which changed the fates of thousands of dying people was not built from positive thinking.  Change happened because people were angry. Access to drugs came about because people stood up and said “this is not acceptable”. It is not acceptable that those of us with advanced disease cannot access the drugs we need because of bureaucracy and the screwed up drug trial system. It is not acceptable that many provinces do not cover drugs like oral chemo.  It is not acceptable that as an act to save our lives some of us have to go out of country to access up and coming drug trials.  It is not acceptable that we are dying.  Empowerment and positive thinking is important but so is addressing the dark side of cancer.  Young adult organizations need to decide whether or not they will take a stand with those of us who are dying and living chronically.  They need to explore how they can contribute to the empowerment of those of us who cannot get past our cancer experience. They need to help end isolation and take affirmative action towards change.

Collaboration: Creating a Tartan of Support

I wrote this post September 29, 2014 on my blog Anna Craig: My Journey with Stage 4 Breast Cancer.

I’ve been doing a lot of thinking about trying to get services and support for the Young Adult Metastatic/Advanced/Chronic Cancer Community. It has been my experience that there is a huge hole and a bit of disconnect in what is available out there. The Young Adult Cancer Community’s main focus seems to be about supporting individuals through and after a cancer diagnosis. Don’t get me wrong, this is important work. The advanced metastatic community is mostly made up of older individuals who have been diagnosed with cancer at the end stages of their lives. The support and services that older populations need are very different from the young adult population. I think for many AYA organization the intent is to support the YA community as a whole regardless of diagnosis or stage. What ends up happening is that the voice and the needs of our community gets lost and to be brutally honest, sometimes forgotten underneath the louder voice of the majority. I have attended numerous Young Adult Cancer events in my two years of living with Metastatic disease and often I walk out of the room in tears feeling even more isolated then I walked in. As I network with more and more Advanced Young Adults, I realize that I’m not alone in my experience. We are a minority of a minority.

I know from my discussions with some Canadian young adult organizations that there is the start of movement, an awareness and a voice surrounding our community. I think that often there is a lack of clarity and understanding on what our needs are and how best to provide services that support us. This is not an easy task, and I think we as a community are also not sure what we need. All we know is that we are different and we don’t fit. What do we do with a small group of people that don’t quite fit? How can organizations with limited resources to support a marginalized community with very different needs?

I truly believe that the only way to move forward is through collaboration. Collaboration between young adults with advanced cancer. Collaboration between young adults with advanced cancer and young adult cancer organizations serving them. Finally and most importantly collaboration between young adult cancer organizations.

I don’t believe one organization can or should be everything to everyone. I believe that each and every group has a strength that can be contributed to the movement as a whole. I think there is an opportunity here to gather knowledge, experience and resources. Together we can stand as a community and create change. If we tie together the threads of individuals and organizations we can create, what I like to refer to as a tartan of support. To be sustainable this initiative has to be more then a grass routes movement initiated by patients. We need the support and collaboration of established young adult organizations to make this holistic, meaningful and sustainable.